The lead doctor or quite possibly the lead team of doctors may not be established immediately. There are good reasons for this. Initially the type of treatment may be impossible to establish until tests are complete. It does little good to have a surgeon take the lead role when EC has spread so widely through the body that surgery is precluded.

Frequently the lead doctor will be the EC-patient's medical oncologist or perhaps a primary care physician. This doctor should be the person who you will go to when you have general questions, when you are switching between modes of treatment and who will follow your progress from diagnosis to what we all fervently hope will be a state of long term "no evidence of disease [NED]". You will need to establish a rapport with your lead doctor. This doctor must be able to explain the situation to you in terms that you can understand. You will be jointly making decisions which will have a profound impact on your treatment and your life.

For periods of time, the lead doctor may take a secondary role. This is common when the lead doctor is a medical oncologist and surgery is imminent. At this point, the surgeon temporarily becomes the de facto lead doctor.

Early on Questions

The early on period is when you and the doctors decide what type of treatment(s) should be used. Much will depend on the situation that you find yourself in. Your doctors may decide that curative surgery is or is not an option based on a series of considerations. Co-morbidity factors (effectively a catch all term for serious secondary medical problems) may make surgery impossible. Your EC may be so far progressed that surgery is useless.

An individual's situation may be so far progressed that the doctors will feel that only palliative (making the EC-patient more comfortable and pain free) treatments are possible. In this case, there may be early discussion of options such as hospices rather than aggressive treatments.

Here are some questions you should ask your lead doctor prior to the start of any treatments:

1. Can you tell me what Stage my EC is in? If the doctor answers with a code such as T#N#M# (where # is some digit) ask the doctor to covert this into Stages 0, I, II, III or IV. Ask the doctor to explain these Stage numbers as they apply you.
   
   Note: The stage numbers are a standard set of tumor conditions. The T#N#M# code is a much more precise specification of your disease. Essentially the stage number and the code is a major factor that along with your health determine what options for treatment are feasible for you. Low stage numbers have the most options and usually are indicative of a good outcome.
   (See the staging page here on the EC Café)
2. What form of EC do I have - squamous cell or adenocarcinoma [or one of the very rare other forms]? How will this affect treatment? What is the nature of cell differentiation in my disease? Are the cells relatively like normal esophageal cells or have they transformed into wild undifferentiated forms? What does this mean in terms of my prognosis?
3. Given my age, vitality, medical condition as well as my staging, cell type and degree of differentiation, what options are open to me? Which ones do you suggest and why? When should I begin these treatments? Where should I seek treatments? Why do you recommend this treatment, facility (etc.)?
• Surgery?
• Chemotherapy (before and/or after surgery)?
• Radiation (before or after surgery)?
• Clinical trials if other options are not practical?
• Palliative care if I am effectively terminal?
• Are "milder" surgical options open to me?
4. What do you expect will be my chances (prognosis)? Ask for this information as how many months can I expect to live with no treatment.
5. What likely effects will occur to my body? Can I expect problems eating and weight loss.
6. How is my case of EC going to affect me? Can you tell me what things are likely and what things are almost certain?
7. When can I expect to recover [or if terminal, how long before I am likely to fail]?
8. Ask for ALL reasonable alternative plans, along with the plusses and minuses for each. Write these answers down along with the plan the doctor favors.
9. This is the point at which you need to ask about clinical trials if your situation warrants. Many clinical trials cannot accept patients who have already begun other treatments.
10. Ask which tests, procedures and examinations are needed prior to the start of treatment.
11. Ask what other doctors you need to see. These should include not only specialists but almost certainly doctors at a major clinic for second opinions. If your doctor is reluctant to have you see another doctor at another institution, this means that you probably would do well to go somewhere else and have another doctor. No doctor should be insulted by anyone seeking second opinions on something as severe as EC.
    
    Be certain of your next steps, procedures and tests. If these tests require a time to be returned to the doctors find out when they will be returned and how to get the results. At this time understand what further needs to be done. Keep all these dates in your EC calendar.
12. What questions do you think I should have asked that I neglected?

Technical Questions

You are entering a world which is totally unfamiliar to all of us outside the medical professions. You will hear about machines whose behavior you won't understand. You will have blood tests (frequently during chemotherapy). The various counts and measures initially will mean little but you may become very much aware of the numbers that indicate anemia very soon. Don't simply accept a term that you don't understand - ask.

Common words may have inverted meanings. We think of "positive" things being good and "negative" things being bad. However whe applied to tests to locate tumors, "positive" and "negative" reverse their ordinary meanings. When a scan is "positive" it means that a tumor a doctor feared in fact exists (bad). What we hoped for was a "negative" result, meaning no tumor was detected (good).

13. What are the following machines and how do they work? What sensitivities do they have? What limitations do they have?
• CT [computerized tomography]?
• PET [positron emission tomography]?
• Endoscopes?
• Ultrasonic Endoscopes?
• X-ray and Gamma Ray scalpels?
• MRI [magnetic resonance imaging]?
• Laparoscopes?
14. What are the rates of "false positives" and "false negatives" and the limitations with these tests?
15. You may be required to use or wear various pumps when you leave a hospital or a clinic. Some pumps are purely for medications, others may allow you to supplement feedings as well as taking medications. You will need to understand any pump which follows you home out of the hospital.
    
    How are these machines hooked up? How are they cleaned and flushed after use? Do I understand any indicator lights and control panels? Can I recharge this machine? Is it portable? In these cases you not only want to ask about the equipment but be coached over and over until you are positive you understand them. It is a very wise idea for both the EC-patient and the caregivers to receive the training. If worse comes to worse, do you know who to call, 24/7?

Intermediate Questions

By now your questions have become more specific to your particular situation. You are not looking for an understanding of EC so much as you are looking for specific answers to highly directed questions. You have become a true expert not on EC but how EC affects yourself. You are either climbing out of the pit that EC dug for you or you are losing ground. In either case you know yourself better than anyone and will be able to ask better questions that relate to the disease than any questions we can innumerate here.

However there are some general questions that assume importance in the intermediate battle with EC. This may be the time for long range planning and perhaps some reflections on what has transpired.

16. What type of tests will become part of my life forever? How often can I expect to have CT scans, PET scans, endoscopic examinations and the like?
17. Are there programs I can utilize to help me regain more of my original stamina and strength? Is my current weight too low for good health? What nutritional supplements should I take if any?
18. Is anyone really ever cured of EC or is EC always something that must be assumed to be lurking in a few cells somewhere?
19. Do I have continuing difficulties coming to terms with my condition? Am I seriously depressed continually or do I just have occasional "blue day"?
20. What long term projects should I begin?

If you are losing ground, you may want to reflect on

21. Have I prepared my family for my departure? Do important members understand my wishes? Have I left unresolved financial, social and responsibilities that I should address while I have the strength?

Long Term Questions

First of all, if you need to look at this section, congratulations! Anyone who can legitimately have long term questions has largely or totally beaten the EC beast. Perhaps you are the one who should be writing these questions.

22. How can I help people who haven't gotten as far along as I have? Do I have the nature and the gregariousness to allow me to help others through the early stages of this disease as an example of success or as a source of compassion and understanding? Not everyone is emotionally suited to these roles, nor should they be. Perhaps you are the type who just wants to forget EC as much as possible. Well if so, you've earned it.

Terminal Questions

Terminal questions are among the most gut wrenching questions of all. Whether you are the EC-patient or the caregiver, you may be filled with mental distress, depression, grief, second thoughts and doubts. You will be in the process of the long goodbye. You may be wrestling with how you want to die or continuing to fight to the end. So many of us have fought the good fight but not succeeded.

23. How do I wish to spend the rest of my days? Is there something I have always wanted to do but left undone which I can still do?